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Search: Posts Made By: Suebee
Forum: MS Fitness 11-04-2019, 11:38 AM
Replies: 51
Views: 20,996
Posted By Suebee
My hope is up/ Iím doing FES!

Hi again, I know Iím a bit chatty here, I hope you all donít mind too much. I wanted to add my recently concocted plan to FINALLY try FES with professional guidance, hopefully get lasting benefit...
Forum: MS Fitness 11-03-2019, 06:42 PM
Replies: 51
Views: 20,996
Posted By Suebee
Hey all, I got renewed focus on current FES...

Hey all, I got renewed focus on current FES studies after Daveís post. I found an article that is information dense, which was published last year. https://doi.org/10.1177%2F1545968317753681

It...
Forum: General 11-02-2019, 08:38 PM
Replies: 1
Views: 175
Posted By Suebee
Update / continued question about modafinil coverage

My husband called today to verify that More than 30 modafinil pills a month are not covered under my bcbs anthem coverage. Initially the insurer rep incorrectly told us to file a renewed request...
Forum: General 10-29-2019, 02:11 PM
Replies: 1
Views: 175
Posted By Suebee
Insurance frustration/ appeal/ meds/ caused undue distress

Anyone else having trouble getting modinifil lately? This med is the reason I can work or go out to grocery shop or see my kids in a event. Ms fatigue makes me feel like I'm on a death March and...
Forum: MS Fitness 10-29-2019, 01:34 PM
Replies: 2
Views: 2,724
Posted By Suebee
Hey all, I love Wii. I Do use balance board and...

Hey all, I love Wii. I Do use balance board and "sports" games that require arm movements. I play with my kids occassionally. Unfortunately wii was discontinued. (I would expect a real gamer to...
Forum: General 10-29-2019, 01:12 PM
Replies: 63
Views: 19,028
Posted By Suebee
Vaccines before treatment?

AM, great idea about updating vaccines before starting treatment. What vaccines did you update? Tetanus seems like a good one. I had last round of vaccines when I entered grad school, awhile ago...
Forum: General 10-29-2019, 01:04 PM
Replies: 63
Views: 19,028
Posted By Suebee
MS L, thank you for sharing your experience and...

MS L, thank you for sharing your experience and your perseverence. I get strength and courage from this forum, and visualizing you farming pushed me to complete some of my important domestic mom...
Forum: General 10-24-2019, 11:07 PM
Replies: 4
Views: 274
Posted By Suebee
Ok, admittedly Iím way way way above my pay grade...

Ok, admittedly Iím way way way above my pay grade ... but I noticed an ingredient in dimethyl fumarate looks connected to HDL levels so I throw this out there for you science people to analyze...
Forum: General 10-24-2019, 09:09 PM
Replies: 4
Views: 274
Posted By Suebee
I am really confused as to why the HDL/MS slowing...

I am really confused as to why the HDL/MS slowing disease progression connection is being studied in the context of a dmd. Is this because there is no money in studying how fish oil supplements...
Forum: General 10-24-2019, 10:56 AM
Replies: 63
Views: 19,028
Posted By Suebee
Smile AM and MSlaz , thanks for you feedback and...

AM and MSlaz , thanks for you feedback and article. It had good overview of issues. I remembered there was a connection and controversy about the 2 drugs, but not any of the details. I cleared all...
Forum: General 10-22-2019, 08:52 PM
Replies: 63
Views: 19,028
Posted By Suebee
I'm waiting for clearance to start Orceveous. I'm...

I'm waiting for clearance to start Orceveous. I'm excited for possibility I will feel better on this DMD. Are rituximab and oreceveous related? Does anyone know how they are different?
Forum: MS Fitness 10-17-2019, 09:07 PM
Replies: 51
Views: 20,996
Posted By Suebee
Dave great article! I'm glad scientists are...

Dave great article! I'm glad scientists are studying this but I'm unsure why it isn't already part of mainstream protocol for MS patients. Stroke and accident victims get PT with it. Different...
Forum: General 09-29-2019, 12:10 PM
Replies: 2
Views: 569
Posted By Suebee
Iíve had similar experiences as you drillerdou. I...

Iíve had similar experiences as you drillerdou. I think years of chasing the next best thing gives a MSer burnout as well as empty pockets. This leads to more hesitancy to jump at another holistic...
Forum: MS Fitness 09-03-2019, 12:32 PM
Replies: 3
Views: 407
Posted By Suebee
Hi glad to have you on forum. It has helped me...

Hi glad to have you on forum. It has helped me understand MS better than any book or dr. My personal experience with MS is yes an increase of symptoms can occur and last days after. I jokingly...
Forum: General 09-02-2019, 08:51 PM
Replies: 6
Views: 1,146
Posted By Suebee
Angry Goatherder, Thatís what I thought. Please...

Goatherder, Thatís what I thought. Please forgive me if I step over the line, I know advocating for oneself is a full time job when one has MS, but Iím worried this is a harbinger for things to...
Forum: General 08-29-2019, 03:46 PM
Replies: 6
Views: 1,146
Posted By Suebee
Goat herder, I remember in another post that you...

Goat herder, I remember in another post that you explained the reason you went off Avonex but I canít remember what it was. Why did you discontinue?
Forum: General 08-17-2019, 04:26 PM
Replies: 12
Views: 3,780
Posted By Suebee
I echo Goathearder. Because it is illegal under...

I echo Goathearder. Because it is illegal under federal law (and the minority of states) it is a treatment that may cause a MSer greater legal woes than symptomatic relief. This isn't to say it is...
Forum: MS Fitness 08-10-2019, 01:15 PM
Replies: 1
Views: 505
Posted By Suebee
"Intolerance of Uncertainty"

I never heard the phrase "intolerance of uncertainty" before but I like it. I like it be cause it articulates a symptom of MS that is often overlooked or even dismissed. Being a bit of a word Smith...
Forum: General 08-03-2019, 06:00 PM
Replies: 2
Views: 562
Posted By Suebee
Cellular phone customer sTORE Guy tip

I wanted to share a tip I got from a cellular phone store today. HE suggested using Google mini to help plug calendar dates into an android phone and set up reminders. HE SAID THE ADTVG is that the...
Forum: General 07-31-2019, 06:14 PM
Replies: 2
Views: 562
Posted By Suebee
Wow, this is a great advance to help people live...

Wow, this is a great advance to help people live more independently ! So good, I put privacy issues aside. (Pretty much )I think one issue now is not whether to use this type of technology but HOW...
Forum: General 07-25-2019, 01:13 PM
Replies: 3
Views: 1,217
Posted By Suebee
Selma Update & progression and stem cell ??

Sadly, I read today that Selma reports quick physical decline due to MS - her cane replaced with need for walking bike and her vocal cords are weakened so she is starting a new treatment. I wish her...
Forum: Dave's SCT Journey 07-19-2019, 09:38 PM
Replies: 2
Views: 1,117
Posted By Suebee
Thanks for posting this article Dave! I haven't...

Thanks for posting this article Dave! I haven't been keeping tabs on follow up studies and Iím glad that it has shown effective for half. I initially had aggressive progression and it was scary to...
Forum: General 06-24-2019, 11:20 AM
Replies: 1
Views: 1,062
Posted By Suebee
Dave, Thanks for posting this... there are so...

Dave, Thanks for posting this... there are so many aspects of living that are impacted by Ms; it can sometimes be hard to articulate.

I think too that MS can change the way others judge you....
Forum: Dave's SCT Journey 04-11-2019, 07:27 PM
Replies: 1
Views: 2,307
Posted By Suebee
Thanks for posting it Dave!

Thanks for posting it Dave!
Forum: MS Fitness 04-11-2019, 07:25 PM
Replies: 4
Views: 671
Posted By Suebee
Beth, thatís awesome that you are committing to...

Beth, thatís awesome that you are committing to this exercise plan! Iím like you in a lot of respects, MS low endurance has made it challenging for me to adhere to a routine. But Dr Whalís helped me...
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